My View

I was in TJ Maxx with my elderly friend, Nora, last Wednesday when I got a call from Paradigm, Aaron’s day group.  I was tempted not to answer it, figuring it was Aaron just wanting to tell me about his day.  That could wait.  But I wasn’t sure, so I did answer and I immediately knew that the news was not good.  Aaron was on the other end, his voice thick and choked with anger and tears.  Here we go, yet again, I thought.  How I wish that Aaron could stay happy!

I picked him up as soon as I got Nora settled back at her apartment.  Aaron was asleep, so I had time to talk to the staff, all of us scratching our heads as to what caused his angry outburst that morning……and what the solution could be.  I found out from Aaron later what happened.  He tried to give his good friend two McDonald’s coupons and she didn’t want them.  She wasn’t being mean to Aaron, just honest, but Aaron felt rejected and very hurt, so he just had a total meltdown. 

Thursday was a better day for Aaron.  Then came Friday…..

I told Aaron that we would go out to eat when I picked him up at the end of his day.  His choice.  So he chose Denny’s, of course.  He does love Denny’s.  On the way to Paradigm, I talked to him about being nice…..being kind with both his words and his hands.  About talking to someone if he was angry or hurt.  He agreed with everything I said……until he walked into Paradigm.

I was waiting in the van after I dropped him off, waiting for him to come and tell me if they were going to a movie.  But instead, out the door came one of his staff.  She told me that Aaron had become verbal instantly with another client when he walked in the door.  Then out came Aaron, yelling at this staff as he stood on the sidewalk.  He eventually got in the van and off we drove.  My anger and disappointment and great frustration spilled out in harsh words as we drove toward home.  I was so mad at Aaron and mad at myself for being mad, and it just all boiled over. 

I pulled into Denny’s, deciding that it might do us both good to be in a neutral place.  Aaron sat on the curb before going in, saying that maybe he just shouldn’t go in to eat.  I told him to come on and he did, but for most of the meal I just sat silent.  I was exhausted and defeated and still battling my anger.  Aaron was scared……scared because of all the people from whom he fears rejection, he fears it the most from me.  He kept telling me that he loved me……kept trying to share his salad with me…..his crackers, French fries, chicken strips……even reached over, took my hand, and kissed the back of my hand.  Yes, he really did that.  I wonder who saw it, and what they thought of my lack of emotion? 

We ran into WalMart after our meal, where I picked up food for Thanksgiving bags for church, and Aaron tried to help.  I still felt numb, tired.  After I checked out, I looked toward the bench where Aaron was sitting, and this is what I saw.

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Then my heart did stir with sorrow for Aaron as this picture of him was a picture of dejection, and his own tiredness.  Oh Aaron, how I wish your life wasn’t so difficult and hard!  And how I wish you could understand that you so often make it that way, and yet so often you can’t control the impulses you have that make you make it that way.  It’s so complicated!

Aaron went right to bed when we got home.  I went to the patio, baby monitor and my Bible in hand.  I could listen for seizures while I spent some time unwinding and processing……reading my Bible and praying.  I could hear Aaron’s steady breathing on the monitor as I breathed out my prayer to God, asking Him for wisdom to know how to deal with these constant ups and downs from Aaron. 

I called my friend, Wendy, who walks this road that I walk.  She understands and doesn’t judge.  She offers counsel and advice, empathy and understanding.  And I know that she prays for us, for Aaron……prays with love and care.

Aaron was awake then, coming outside to test the waters……to see if Mom was still distant and angry.  He relaxed some when he could tell that I was better.  He smiled when I said that we could take Jackson for a walk around the yard.

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We walked down to the back of our yard, around the huge evergreens that hide the very back loop of our property.  It’s an area that is hidden from view as you stand on our patio or look out our windows.  You would never know it’s there until you walk behind the thick trees that keep it hidden.

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I stood looking at the eerie sight.  Branches of the old trees there hang low, gnarled together as they bend toward the ground.  A finger of the neighborhood lake curls around under the limbs, still holding water since we’ve had such a wet summer.  It’s a shadowy and dark place, a little creepy even.  It’s interesting, but not warm and welcoming……not a place I want to linger for long. 

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As we stood there, Aaron talking and Jackson sniffing the bushes and tall grass, it hit me that this is so much like our life with Aaron.  Anyone who lives with a person who has autism…..or multiple seizures…..and takes tons of meds to help them…..knows what I mean. 

Aaron is funny and smart and often kind.  But he is also prone to angry outbursts where he is hurtful and unreasonable.  For days we may mostly see the pleasant side of Aaron, but we know that hidden inside him is still the anger and the frustration that he feels, and sometimes releases.  It is not a fun place, and it is not a place where we desire to linger.  Yet sometimes Aaron makes us linger there as his brain is going through whatever his brain goes through at those times. 

I know that mentally and emotionally I must walk away from the shadows that threaten to engulf me when I am overwhelmed by Aaron’s behaviors.  He needs me, for one thing.  And I need to stay whole and strong, loving and forgiving.  It’s not easy, but I must.  Friends and family help.  A good staff at Paradigm helps.  Gary is my biggest help, taking over when I can’t.  And definitely, crying out to God helps the most. 

Aaron and I turned from that scene, finally, and went back out into the open yard…..to the sunshine and grass……to the full view of our welcoming house.  Likewise, given a little time, he and I returned to our normal relationship.  I love him dearly.  I know he needs me.  He needed me when he had three hard seizures during the night on Friday.  But he also needed me even more when he was out of control emotionally that day.  He needed me to believe in him…..to discipline him……to try to help him even when he pushes me away……to care for him and to love him.

Behaviors are perhaps the hardest part of Aaron’s disability.  They are frustrating, embarrassing, and exhausting at times.  Families who deal with this need extra love and prayer.  Staff who deal with this need the same, as well as frequent thank-you’s for what they endure. 

Aaron’s behaviors hold him back in many ways…..and could easily hold us hostage in many ways, as well.  But Gary and I know that we can’t let the dark times be our focus.  Like the staff at Paradigm says, today is a new day and we start all over.

We don’t always get to choose our view on any given day, but we don’t have to stay forever where the view is scary and dark.

“Today is the day that the Lord has made!  Let us rejoice and be glad in it!”  (Psalm 118:24)

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I’ll Go Happy

Last Monday, Aaron had a rough and grouchy day at his day group.  Sometimes we can pinpoint the cause and other times we just can’t.  I’m so thankful for the understanding staff at Paradigm.  I don’t know how they do what they do on some days, but I do know that they don’t get paid enough for all they endure on those days.  I love their philosophy:  Tomorrow is a new day and we start all over.

As I said goodnight to Aaron at the end of his rough day and gave him a hug, Aaron said, “Mom, tomorrow I’ll go happy!”

So on the next day, the new day in which we were starting all over, Aaron was indeed happy.  His attitude was entirely different than the no good very bad yesterday.  And on this better day we also got some wonderful news from our daughter in Houston.  She has a break between jobs and was coming home for a visit!!!!  Not only Andrea was coming, but also her boyfriend Kyle!!!!  Not only Andrea and Kyle were coming, but also Andrea’s two dogs and Kyle’s dog!!!!!   

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Can you tell I was excited?  You bet!  Aaron was excited, too.  He loves and misses his sister.  He’s getting to know Kyle and to realize that Kyle is a new part of our family.  But oh, I know Aaron and I know that having a house full of people and pets can be challenging for him.  We face this issue any time that we have extra people around…..extra noise……extra routine disruptions……extra attention grabbers away from our usual main attention grabber.

We work to prepare Aaron for those disruptions before they occur.  I went over several things with him, like how he would use Gary’s and my bathroom while Andrea and Kyle were here.  We talked about the dogs and how we need to act with having four dogs in the house.  I tried to cover all the bases with Aaron, but Aaron brings out new bases quite often……based on what’s happening around him at the time…..things we just can’t predict. 

I let Aaron stay home from Paradigm on the two Paradigm days that Andrea and Kyle were here.  Aaron was SO happy with that idea!!  He loved going with us to eat lunch at Freddy’s.

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He loved going for a walk in Swanson Park.

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He loved being here with us and the doggies.

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He loved us watching Independence Day Resurgence with him while he ate snacks and snacks and snacks.

He loved trying to sneak snacks and snacks and snacks to the doggies.

He loved talking to all of us, especially to Andrea and Kyle, about all his favorite topics.  And this is where we usually start seeing some issues with Aaron, because Aaron doesn’t know when to stop talking.  Sharing the stage is hard for Aaron.  He truly wants to be included in our conversations as we sit around the dinner table, for instance.  We do listen to him and try to include him, but Aaron isn’t going to talk about the subjects that we talk about. 

Here is a sample conversation:  We may be talking about Andrea’s new job or talking about Kyle’s summer at sea.  Then Aaron will loudly call one of our names.

“Andrea!!”  he says.  When she responds to him, we often hear this from Aaron:  “Ummm.  Ummm.  Ummm.”  We wait.  “Ummm.  Did you know what the Queen Alien on Independence Day Resurgence looks like?!”

“No, Aaron, I don’t know what she looks like,” Andrea answers.

“Well, she looks like a…..I don’t know.  Mom, what do you think she looks like?” Aaron asks.

So I try to answer but I don’t really know how to describe the Alien Queen because it’s been awhile since I saw that movie….and I don’t really care what the Alien Queen looks like…..and in trying to muster some enthusiasm and interest in this question that I’ve heard a hundred times, Aaron can sense a shift in my emotions.  As much as Aaron struggles with social norms, he is very adept at picking up the subtle cues that we are not as animated about Alien Queens as we are about Andrea’s job or Kyle’s schooling. 

He views our world from afar, wanting so much to enter in, but never knowing how.  But he does express his frustration by comments that we later hear.

“Mom, you didn’t want to talk to me.  You just wanted to talk to Andrea or Kyle,” he will say. 

I try to explain that we do want to talk to him but that we haven’t seen Andrea or Kyle in so long…..and we want to catch up with them on their lives…..but to Aaron that doesn’t make sense.  Round and round we go, and where we land nobody knows.  Or when we land.

Which happened on Friday during supper.  Andrea’s friend, Sarah, had come over to see Andrea and Kyle.  They sat in the family room visiting and talking and laughing.  Aaron was up in his room, then down in the family room…..up in his room, down again.  He wanted to be a part and he was in many ways.  He just can’t be the whole part and so conversation would swirl around him.  Kyle was talking and laughing at one point, and Aaron whacked Kyle’s leg with a book.  I heard it but didn’t see it.  It was a sign of things to come.  Aaron was frustrated now, truly frustrated, and when that happens he picks a target.  Lucky Kyle.

I don’t remember all the details of what happened at supper.  I was up from the table getting slices of cheesecake ready to serve.  Aaron was at a boiling point and we didn’t realize it.  His system was on overload…..his pressure gauge was maxed out…..and he erupted.  He leaned forward and yelled at Kyle. 

Aaron left the table.  We apologized to Kyle.  He was understanding and patient.  Aaron came down later and apologized.  We watched the movie later and Aaron was very happy, as if nothing ever happened.

Why do I tell you this story, one you’ve heard before if you’ve read this blog for very long?  Because this scenario is just a very real picture of how Aaron processes…..or doesn’t exactly process…..the world around him.  Our world is ticking along like normal, but Aaron’s isn’t.  He is so impacted by nuances that we don’t even notice.  Sounds…..loud laughter that he doesn’t understand…..hilarity……silliness…..his routine changing….   All these things greatly affect him, more than we can begin to know. 

So he reacts, usually loudly and hurtfully.  Then he’s sorry.  It takes great understanding, as I’ve said, to deal with this about Aaron.  He doesn’t think like we do or process as we do or react over time as we do. 

But he truly wants to. 

Andrea and Kyle left to go back to Houston the next day.  Aaron was with us in the driveway, entering into things, when Andrea asked for a hug.  Aaron ducked his head and walked away, through the garage and into the house as he muttered to himself.  A hug in front of everyone?  Are you kidding me?!  We know this about Aaron and it makes us smile.  He can yell, but spontaneous hugs are very, very difficult.

One of the first things I did after they left was to get Aaron’s things put back in his bathroom.  “Us kid’s bathroom,” he calls it.  We got his cup with his toothbrush and toothpaste put back on the counter.  We got his body wash and wash cloth back in the shower.  We hung his towel on the towel rack. 

Aaron then noticed that his razor attachments were not in the correct place.  He rearranged them the way he wanted them.  He stood back and observed the counter for a few seconds. 

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Then he said, “OK.  It’s looking good.”

That night at supper, Aaron asked the blessing.  He nearly always says two things when he prays.  He doesn’t say the same thing with each prayer, but he says two things.  On that night he said, “Lord, thank you for the food.  And thank you that Kyle and Andrea got to come.”

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Yes, it was looking good now for Aaron.  He was happy that Andrea and Kyle were here, along with Darcy and Oakley and Aries and our own Jackson.  He will be very happy when everyone comes for Christmas. 

Aaron will have every intention of saying, “I’ll go happy!” 

He’ll go happy into our family time, but it will be a time of upheaval for him and of struggle as well.  It’s up to us to understand that and to allow that for Aaron, all the while trying to help him know how to take time to decompress and not to blow up. 

Only when things are back to normal…..Aaron’s normal…..will he be able to step back and say, “OK.  It’s looking good.”

And it’s very important for us to be able to look at Aaron’s world through Aaron’s eyes, and still be able to say, “OK, Aaron.  It’s looking good.”

Let’s go happy!  It’s sometimes the hard choice, but always the best choice. 

It Makes Me Think

I wrote earlier about Aaron’s difficult day on Monday, and about his desire to take a “sorry card” to his friend whom he had hurt.  ( Another “Sorry Card”)  Time now for a quick update.

I walked into Aaron’s room on Tuesday morning, carrying his cups of coffee and finding him sitting on the edge of his bed.  He was writing in his log book the precise time that he was getting out of bed, and still trying to fully awaken.  I know not to talk a lot to Aaron first thing in the morning.  He needs time to process his new day, time to drink his coffee, time to shower…..and I need time to evaluate his mood.  So I said a simple good morning as I put his coffee on the bookshelf beside his desk.  He never even looked at me, which is typical.

But he did speak. 

“I don’t want to go today,” he softly said.  “I have a headache.”

I never know if he really has a headache, or if he’s just trying to get fully awake.  I don’t try to talk him OUT of having a headache, and neither do I encourage him to indulge his headache. 

“I’m sorry,” I said as I walked out of his room.  “I’m getting in the shower now.”

“I don’t want to go today,” he repeated.

“But what about the “sorry card” and Burger King coupon for J, and the pillow for S, and the green pepper for Barb?” I asked.

He was silent.

I went on about my morning.  I heard him taking a shower and then later heard him on his computer, yelling happily…..which is always a good sign that his outlook has brightened.

I went to his room for his glasses so that I could clean them before we left for Paradigm.  There lay the pillow for S, and the “sorry card” for J, near his empty coffee cups. 

“I’m going, Mom,” he said.  He even sounded cheery, and I was very relieved.

We walked out the door later, Aaron carrying a bag in which we had placed the pillow and the green pepper.  His “sorry card” for J, along with the Burger King coupon, were in a plain envelope and placed in the bag as well.

Aaron went into Paradigm with no hesitation when I dropped him off at the curb.  I prayed as I drove away, that Aaron would be happy and kind and would actually give his gifts to his friends…..especially the “sorry card” to J, for that was most important.

That afternoon my phone rang.  The caller ID displayed Barb’s name, and my heart dropped a little.  Sometimes Aaron calls me using Barb’s phone, and some of those times it’s because he’s unhappy.  Sometimes Barb calls me, though rarely, but usually it’s because Aaron is having a really rough day.  Sometimes Aaron also calls just to loudly laugh and tell me how much fun he is having.  Sometimes answering that phone is like playing Russian Roulette.  I just don’t know what pressing that answer button will bring.

“MOM!!!!” Aaron yelled into the phone.  And I immediately knew that he sounded like all was well.  “I wanted to tell you something!!”

“OK,” I simply answered, hoping for the best.

“I’ve been having a good day!” he continued.

“That’s wonderful!” I replied.  “Did you give J the “sorry card” and the coupon?”

“YES!!!” he said.  “WAIT, MOM!!!  WAIT!!!!” he eagerly said.

Now this always means that Aaron is getting ready to hand the phone off to someone else.  Often it’s Barb, and I’ll hear Aaron say to her, “My mom wants to tell you something!”  And Barb knows full well that I didn’t say I wanted to tell her something, so she gets on the phone laughing and she hears me laughing, and we talk for a minute while Aaron – I’m quite sure – is standing nearby rubbing his hands together furiously.

So on this day I was prepared to once again hear Barb’s voice, but it wasn’t.  I heard a young man’s voice haltingly saying hello to me.  He was a little hard to understand, but I figured he was J.

“Is this J?” I asked him.  He said yes.

“Thank you for the card and the coupon,” he said.

“You’re very welcome, J,” I told him.  “I’m sorry that Aaron hit you.”

“Oh, it’s OK,” he replied.  And he said something else about the coupon.  I could tell he was very happy with that, and with the “sorry card,” too.

He handed the phone back to Aaron, who told me with great exuberance that he had also given the pillow to S and the green pepper to Barb.  We soon hung up, with me feeling very happy for Aaron.

As we drove home that afternoon from Paradigm, we talked about how much it meant to J to get the card and especially the coupon.  We talked about how S smiled when Aaron gave her the pillow.  We talked about how Barb thanked him for the green pepper. 

And we especially talked about how happy it made Aaron when he was kind to his friends……how much better he felt on this drive home because of being nice.

These are simple, elementary truths that seem so hard for him to retain.  Aaron wants to be nice.  He really does.  But his impulses and his lack of filters sometimes drive his “nice” desires out of his brain quickly as he responds to the moment.

The next morning, Wednesday, Aaron wanted me to go inside Paradigm when I dropped him off.  He wanted me to talk to S about the pillow he had given her.  Sometimes my to-do list makes it hard for me to agree to anything extra, but something told me that I should do this for Aaron.  So I parked the van and we both got out, walking inside his day group together.

Aaron immediately strode over to the wheelchair where S was sitting, and I followed. 

“S!!!!” Aaron said, rubbing his hands together.  “Here’s my mom!!!!”

I felt like I was Vanna White on Wheel of Fortune.  “Here’s Vanna White and Pat Sajak!!!!!” 

I walked around to where S could see me, and I patted her arm as I told her hello and asked how she’s doing.  S always says that she is fine, as she is all bent over in her chair.  She amazes me as she does something else I always see when I am with her……she smiles.  A huge, sweet smile.

“Did you like the pillow that Aaron gave you?” I asked her.  There was that wonderful smile again as she looked up at me and said a simple, “Yes.”  But her smile said it all.  It must mean a lot to her, in her limited world, to have friends.  I know that Aaron understands that.

One day, when talking to me about his friendship with her, Aaron said to me, “S doesn’t have much friends.  Am I her friend?”  I told him that he is indeed her friend…..a good friend.

“It makes me think I don’t know what to think,” he answered after some thought.

How sweet!  How telling! 

Friendships do matter to Aaron, very much.  He just doesn’t always know how to make them…..how to maintain them……how to express his feelings to his friends without being loud and rough. 

But sometimes he does, like with S.  He talks a lot to us about her limitations and he feels empathy for her.  So even if he thinks he doesn’t know what to think, the very fact that he IS thinking about these things is very positive to us.  We’re thankful that this week turned out so well…..that Aaron hopefully learned some important lessons…..and that those lessons will actually STICK in his brain!!

Because trust me, there are many many days that Gary and I look at each other after an Aaron episode and scratch our heads.

Aaron’s words could easily be our words:  It makes us think we don’t know what to think!!!

But I do think that this week has been mostly positive, for me and for Aaron and hopefully for his friends. 

It makes me think that we have a very special son, even when he makes me think I don’t know what to think!

And that’s just how it is around here.

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A Sometimes Wonderful World

Aaron was with me all day on Monday because he had a doctor appointment in the morning.  Afterwards, we swung by the eye doctor to have his glasses adjusted; went to Taco Bell for lunch, which was the real reason that Aaron was happy to be with me; and then to Wal-Mart, his second real reason for being happy.  I experienced quite a few autism moments, too many to remember them all……for after all, Aaron’s whole being is influenced by autism.  So is mine.

There was the ride in the van across town, and Aaron’s excitement about listening to the CD he had chosen.  Pop Memories of the 60’s was quickly inserted in the player, and then Aaron’s instruction as he held his hand up, palm facing outward:  “Don’t talk.  I want to listen to the music.” 

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The number 1 showed on the CD player, so Aaron reached down to quickly pick up the CD holder and announce in his monotone voice, “Stevie Wonder.”  He bent over again to place the CD holder back where it had been.  The song began and Aaron said, “Mom, do you like Stevie Wonder?”

Notice who’s doing all the talking.

So we listened to “My Cherie Amour” as memories of high school flooded by brain.  But I didn’t share that with Aaron because I wasn’t supposed to talk. 

Then number 2 came on the player, so Aaron bent back over to pick up the CD holder.  “Kenny Rogers and The First Edition,” he again announced.  And back down went the CD holder.

Number 3:  Pick up holder…….“Tom Jones,” Aaron flatly said…….replace holder. 

Number 4:  Pick up holder…….. “Mama Cass,” was announced……replace holder.

You get the idea.  All across town, and back across town, he never tired.  Oh, and there was this one.

Number 10:  Pick up holder……. “Lois Armstrong,” he said as sounds of “Hello, Dolly!” filled the van. 

“Ummmm, Aaron, that would be Louis.  Louis Armstrong.”

“Don’t talk, Mom!  I want to listen to the music,” said guess who?

This doctor visit was to the psychiatrist who oversees his autism care.  Oh, could I fill her ears full!  I refrained somewhat, but Aaron didn’t.  He stretched himself out on her small couch right away, uninvited to do so, legs hanging out over the end, and proceeded to talk about Mom’s upcoming trip to Houston……his upcoming trip to NC with Mom and Dad……his new Superman set of movies that we let him have for the NC trip……and Ultraman.  Among other things. 

Later, at the eye doctor, he was rather impatient as we waited.  Doctors and glasses adjustments are such a bother, especially with Taco Bell just around the corner!  Then in walked a nun, dressed in her full habit from head to toe.  I hoped that if I began tickling Aaron’s back, he would keep looking down and not see her.  Aaron is fascinated with nuns and with their unusual clothing, so I wasn’t sure what he would say.  Too bad we didn’t have a CD playing so maybe, just maybe, he would be quiet.  He did look up and he did see her, of course, standing right there at the front desk.  But as she walked into the bathroom, out of earshot, all he said was, “Mom, she’s wearing a hood!  She must work for the church.” 

I was pretty relieved when she was called back immediately.  I had no idea what to expect with both of them sitting in the waiting room together, and it wasn’t her I was worried about.

Aaron loved lunch, of course, even amid my reminders about not whistling as we waited for our food or making various other unusual noises.  And then before we ever stood up to leave came my reminder to him about stretching.  Aaron makes quite a production of stretching when we get up to leave a restaurant, his back arched and his stomach stuck out and his amazing stretching noise.  So I’ve learned to remind him before we even stand up that he is not supposed to stretch, which I did there in Taco Bell.  He stood up, though, and did a suppressed stretch……what you might call an abridged stretch……which on Aaron still looked amazing and drew attention, I’m sure.  I’ve learned not to look at the people sitting nearby.  He just looked a little like he was puffing up and about to implode, right there near the drink machine.  Nice.

And then he saw it……the quarter that someone had dropped on the floor directly in front of the register.  He has such hawk eyes for things on the ground, unless it’s his dirty clothes in his room or his mounds of books on the floor.  I tried to stop him but it was too late.  He bent over clumsily and picked up the quarter, while the line watched him and I just stood there.  It was quite a sight, Aaron doing the old man bend.  The employee told Aaron to keep the quarter, which he gleefully pocketed, oblivious to the scene he had just created. 

Dear Aaron!  He is so unaware of how funny and unusual he is, or of how he comes across.  These autism moments, I call them, come in many various forms.  And yesterday at his day group, they weren’t so funny.  The not so funny autism moments cause anxiety and frustration for many other reasons.  He wasn’t so happy to go to Paradigm yesterday, but he went.  He ended up in tears for part of the morning, and then in the afternoon he was almost manic in his fake laughter and his “teasing.”  He calls it teasing, even though we all remind him over and over that if he’s the only one laughing……and others are hurt or angry…….it’s not teasing.

Aaron thinks it’s funny to say things to people like, “You’re fat!  You’re dumb!  You’re old!”  Or many other things as well, most of which are not funny at all.  He truly can’t seem to permanently connect what is correct to say from what he impulsively wants…..and does…..sometimes say.  This is especially true when he is frustrated about something.  Instead of addressing the issue of his frustration, he will verbally harass others, and then often regret it later.  And he does it under the guise of “teasing.”

He has a special friend who is all bent over in a wheelchair.  He has shown so much kindness to her.  I wrote once about how he waited on her at the end of the line as they walked to Quik Trip so that he could walk with her.  He loves giving her things or helping her eat.  But yesterday on the way home from Paradigm he said, “Mom, I told S that she’s ugly.  I was just teasing!” 

I was so hurt for S and I was so disappointed in Aaron.  I told him that S is a young woman who would love to be able to get up from that wheelchair, go shopping for pretty clothes and make-up, and get her hair and nails done.  I told him that she would love to go to bed at night thinking about how Aaron had told her that her hair was pretty, or that she had a pretty smile.  Instead she would go to bed that night thinking of how Aaron had said she was ugly……and she probably feels ugly every day. 

Aaron listened.  He talked about it last night at supper with Gary.  I have to say that it was hard for me to say the words I said to Aaron.  Part of me wanted to just assure him that I was sure S knew he was teasing……that it was OK, but he should do better……or that we all understood what he really meant.  But I knew that I needed to let Aaron know of the hurt he had inflicted, while it also hurt me to say the hard words to Aaron without backing down. 

Aaron had a small seizure at 5:30 this morning, but it was enough for him to wake up later with a bad headache and with bleary eyes.  I let him stay home today.  Later in the morning, he went with me to run a few errands.  On the drive back home, out of the blue, Aaron remembered.

“Mom?” he asked.  “Can we stop at Dillon’s so that I can get S a sorry card?”

My heart was so touched, and so thankful.  Aaron does know right from wrong.  He does feel bad when he’s been hurtful, even though it’s after the fact. 

So I told him that I had some cards at home.  Right after we ate lunch, before he took a nap, I got out my card box and found him a card that he liked.  It was blank inside, but not for long.  Short and sweet, he simply wrote these words, with her name underneath.

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I hope that he has learned a lesson, one that will stick and not be forgotten during his next crazy mood swing or unhappy moment. 

The last song on the 60’s CD was another one by “Lois” Armstrong – “What a Wonderful World.”  I want Aaron’s world to be wonderful, but I want him to also understand that he can quickly ruin the wonderful world of others by his words and actions. 

Likewise, he can make it right with things like his “sorry card,” and with an attempt to watch his words and his teasing.  Our job is to instruct, to understand, to be patient, to forgive…….and to be thankful for the wonderful world we share with Aaron, even on the rough days, always hoping that the rough days will be fewer and the wonderful days more frequent.     

Now, don’t talk!  Let’s listen to the music. 

Sing it, Lois!

A Nightmare and a Flower

3:30 a.m.  I heard Aaron stirring, then walking up the hall to the bathroom.  He closed the bathroom door with a thump because he never, ever closes doors quietly.  Soon the bathroom door opened, but instead of walking back up the hall to his room I heard our bedroom door open.

“Mom?” Aaron said in as much of a whisper as he can ever muster.  Whispering seems to be a lost art with him. 

“Mom?” he repeated.  I answered him and he continued.

“Can you come to my room?  I need to talk to you about something.”

So I followed Aaron to his bedroom, where he wanted to turn on the light so that he could talk better. 

“Mom.  I had a nightmare.  I dreamed that you and dad made me go live in a support home because I was mean.” 

So that would explain what I had heard him speaking in his sleep earlier……something about wondering if someone would come up to his room to see him.  We talked about his nightmare, as he called it.  He has such a fear of ever having to leave our home.  No matter how we approach that subject it never goes over well.  But we hadn’t talked about it at all the night before, or even at all recently, so I don’t know where the dream came from.  But it greatly bothered Aaron, enough for him to call it a nightmare. 

We talked for a few minutes and I assured him that everything was fine, and not to worry about us making him move because he was mean.  But it is important not to be mean, I had to add.  And with that I made sure he was all the way in his bed, said goodnight, and turned off his light.

He was up before 8:00.  He walked into the kitchen looking a little worse for wear.

“Mom,” he immediately said.  “I don’t feel good.  My head hurts.  I feel weak.”

I tried to encourage him, but finally he brought up the real issue of the nightmare.  He decided that this awful experience should earn him a day off from Paradigm, but he saw right away that I disagreed.  I exuded cheerful optimism, which he tired hard to override with his dreary post-nightmare pessimism.  We were in that familiar tug-of-war. 

A shower and three cups of coffee helped a little, but Aaron had decided that he was not going to Paradigm.  I always leave the final choice up to him, but he knows the consequences of not going.  I told him that we would run down to get him a haircut, which he loves, but after the haircut he was still pretty firm about staying home.

I agreed to take him home and then told him that I was running my errands.  After that, I said, I would be busy all day getting ready to leave tomorrow on an out-of-town trip for Gary and me.  By the time we pulled into our driveway, he was happier and I was on the phone.  He opened his door and in a flash, my door opened and there stood Aaron……holding something for me.

“Here, Mom!” he tried to whisper.  “I picked you this flower.  I picked it because I love you and I’m going to Paradigm.”

Then he handed me the flower, bent over to lean in the van, and gave me a HUG!!

You could have blown me away!!  Kind of like the little seed pods on the flower he gave me.  You see, his “flower” was this:

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But he was as proud of this old dandelion as he would have been if he was holding a dozen roses.  And trust me, I was too!  This bent over, half bald seeded dandelion was what Aaron saw first and so pluck it he did……for Mom!

After I got off the quick phone call, I thanked and thanked Aaron for the flower.  He just beamed.  He got his glasses and his watch and his wallet, and off we went to Paradigm.  I think his morning there was a little tricky, but the rest of the day seemed to go well. 

It’s a good thing I don’t have allergies, because I’ve kept my special flower in the kitchen all day.  It’s nothing spectacular, but it’s the best Aaron had.  It would have been understandable for me to not want this sad sample of a flower.  To maybe throw it away when Aaron wasn’t at home. 

But I keep thinking about how the best Aaron had to give me was…..well…..not what we would call great, but it was from his heart and that makes it totally awesome.  That’s so often what Aaron does and is, all through the days of his life.  We may not get exemplary behavior every day…..we may not see stellar progress on most days…..we may not even take the time to notice how hard he tries on other days.

But for Aaron, it’s there.  His attempts to fit in, to express himself, to understand this world we live in with him, are there.  Some days the best we get is for him to ask if I’m happy that he didn’t make “farting noises” with his mouth in the store, but he made “meow” noises instead.   Or that he didn’t clap SUPER loud or clap too AWFULLY many times.  Or that he didn’t get 10 toothpicks at the welcome counter at the restaurant…..only 4! 

He so wants us to be proud of him.  He so wants to conquer his inability to communicate what’s really on his mind…..what’s really bothering him……what’s in that heart of his.  But it’s just so nearly impossible sometimes for him to do that……to talk like you and I do.  He might react, like he did this morning.  He might hit or slam a door or be defiant.  But I’m convinced that part of the frustration that Aaron feels is not that he’s mad at the situation….he’s mad at how very hard it is for him to identify and express to us just what he’s mad about. 

So whatever he is able to share, we must take it gladly and try to understand.  We must grasp what he hands us and take care to handle it well.  Just like my dandelion flower.  Would I have chosen it?  No.  But Aaron did, and with it he showed me his love.  To me that gangly old dandelion is beautiful.  It represents Aaron’s heart. 

I hope that when he sees it sitting on the table, or maybe later in a vase, he’ll know that Mom not only loved his gift……he’ll know that Mom loves HIM. 

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The Wonder of Me…..And Aaron…..And Lots of Things

I went to pick Aaron up at his day group on Thursday afternoon. I waited in the van for a couple minutes, then saw Barb coming toward me. I knew before I really knew that this probably wasn’t going to be good news. I was right. She told me that Aaron was inside after having a very rough afternoon and that he was refusing to come outside. I went in and we found Aaron laying on one of the couches, crying and very upset. After some time, and moving to a new couch where he laid down again, he told the story of how he had acted……which often starts with him thinking he’s teasing but turns ugly pretty quickly. One thing led to another and the situation became something it never needed to be.

How we wish that Aaron understood that his idea of teasing is often anything but. How we wish he could control himself when he is being redirected. All the talking and lectures and therapy in the world doesn’t seem to sink in. Maybe a little, but not as much as needed. He just doesn’t connect actions and repercussions like you and I do. Reading about the autistic brain……writing about the autistic brain…….saying that I understand the autistic brain as much as I can…….often doesn’t mean as much as it should when I’m staring at my belligerent son, hearing of his actions and trying to control my own embarrassment and anger.

Aaron is often immensely funny, but Aaron is also sometimes immensely frustrating. Thursday fell into the last category.

Aaron is seeing a family therapist every two weeks. This is a new thing for him. I had high hopes that as much as he loves to talk, he would really take to this and love talking to her. It hasn’t quite worked out that way. If she just let him talk about his things, like aliens and movies and games and eating out, then he would probably look forward to it. But he realizes that she wants to talk about his issues……how he’s doing at Paradigm and at home with relationships and anger and attitudes. To Aaron, this is uncomfortable and a waste of time, so he hasn’t been enjoying their sessions like I had hoped.

This past Tuesday she gave him a paper on which she had drawn a large stoplight. The green light means that he is doing good, so keep going. The yellow light means that he is starting to feel some frustration, so he needs to be cautious. The red light means that he is having a meltdown full of anger. At the end of the day, he is to mark what kind of day he has had…..green, yellow, or red.

Aaron didn’t want to take the paper home from her office. Then he told me several times that he thought the paper was stupid. I left it alone on Tuesday night, but on Wednesday night I told him before bed that it was time to mark his stop light with what kind of day he had. I felt like Wednesday had been a green day, so I thought he would be happy to mark the green light. But when I told him to get his paper and mark it, he crossed his arms and told me that he had hidden the paper.

Oh boy.

After some talking, he finally got down on his hands and knees, and pulled the paper out from under his bed. He rolled his eyes as he put a mark on the green light, the mark I thought would make him happy. Then he picked up the paper and as we stood there talking before saying good night, he crumpled that paper some in his hand. He was simmering, I knew it.

So after his meltdown Thursday at Paradigm, and a rather rough evening at home during Skip-Bo as I tried to talk to him, he went upstairs at my direction and brought down the stop light paper so that he could mark it. I knew that he needed to put a mark on the red light, and he knew that, too.

He came down to the kitchen table with his paper, and this was what he laid on the table.

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Well, so much for that idea. How many times I say that when we try something new with Aaron!

So often it’s back to square one with Aaron. We rarely feel like we pass go and collect our $200.00. I know there are times in his life when he needs to pull back and reboot, so on Friday I let him stay at home. He went grocery shopping with me, helping me at the store and helping me carry in the groceries at home. We went to see Jungle Book, run more errands, and get him a sub for supper. We watched a little TV in the evening. It was a pleasant, fun day for both of us.

Aaron found an Elvis CD that he wanted when we were shopping together at the first of the week. He’s been completely fascinated with the songs and with Elvis all week as we’ve listened to the CD while driving. He’s been hilarious with some of the things that he has said about Elvis, like how his voice is “jiggly” and his dancing is “rowdy.”

So on Thursday, meltdown day, Aaron turned on the Elvis CD in the van. The second song that played just left me pretty stunned and with a huge lump in my throat. “The Wonder of You.” Look at the lyrics for the first part of this song:

When no one else can understand me.

              When everything I do is wrong.

              You give me hope and consolation,

              You give me strength to carry on.

 

              And you’re always there to lend a hand

              In everything I do.

              That’s the wonder, the wonder of you.

 

Aaron has decided that he loves this song. It’s uncanny. This song that speaks volumes to me about what kind of mother I need to be with Aaron has become a very special song to him as well. It’s not for the reasons that it’s meaningful to me, either, because I’ve had him tell me why he likes it so much. But he’s played it over and over since Thursday. We even listened to it with Gary at supper last night.

I really do want to be this kind of mother in Aaron’s life. Sometimes he’s certainly hard to understand and he does a lot wrong, but I pray that I will give him hope and consolation, strength and a helping hand.

Honestly, many times, I don’t feel like I’m a wonder. I feel more like I’m left wondering…..wondering what to do, wondering what’s going on, wondering how I can stay calm…..

I could go on for a long time about some of the ways that I wonder.

But Aaron needs me to be there for him despite the wondering and the frustrations, the tiredness and the seeming dead ends that we end up taking. He’s taking a nap right now and just had a seizure. He needs me physically, too.

But he needs me the most when, like the first part of the song says, no one else understands him and everything he does is wrong. I know he’s frustrated by those times more than we are.

All moms can relate to what I am saying, and especially moms of special needs kids and adults understand it all too well.

Aaron will probably never look at me and say, “Wow, Mom! You’ve meant so much to me. You’re a wonder!”

Just reading that makes me laugh. I’d faint if he said that and probably get hurt, so it’s just as well that he doesn’t say it, right?

But I will keep striving to BE that in Aaron’s life…..pick him up, understand as best I can, hold his hand (figuratively speaking, because he doesn’t hold hands much ), and give him strength and consolation.

But trust me, I know me, and I know that at the end of some of our days I’ll still be saying, “Yes, I’m a wonder! I’m a-wondering how on earth we both made it to the end of this day alive and in one piece!!”

And tomorrow’s a new day!

             

Monopoly On a Scrabble Board

I have a dear friend, Joyce, who has two sons with special needs. They each have significant special needs. Joyce is someone that I admire very much. I know she couldn’t handle all that she does apart from God’s grace. One day over lunch, she said the most profound thing to me. We were discussing some of the unusual ways that our boys function in their daily lives, and how we must function as their moms.

Joyce said, “It’s like playing Monopoly on a Scrabble board.”

That’s just one of the best descriptions I have ever heard about living with a child with autism, or many other developmental issues.

How on earth DO you play Monopoly on a Scrabble board?!! At first glance, I might say that you DON’T!! But as parents of our special children, we must. We have to be creative……flexible……think outside the box……and be very patient when all the pieces just don’t fit.

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The bottom line is this……we just don’t have a choice. So we take the Scrabble board and figure out our version of Monopoly, often writing the rules as we make the plays……and changing the ones that don’t work.

Aaron has been doing so well lately that I’ve felt like I’m mostly playing Monopoly on a Monopoly board. Imagine that!!

Oh, we always have our Aaron moments because that’s just how it is. But he’s been unusually happy and kind lately, both at home and at his day group. He’s even wanted to help more around the house, including in the kitchen.

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There are mornings that he hasn’t wanted to go to his day group, just like we don’t always want to get up and face our day. One morning he was getting upset about having to go to Paradigm, saying that he just doesn’t have a good time there.

“But Aaron,” I countered, “every time I pick you up, you say you had a good time.”

Not missing a beat, Aaron replied, “Well, the next time you pick me up, I’m gonna say I DIDN’T have a good time!!”

So there!!

He didn’t see my smile as he huffed out of the room. He ended up going that morning and having a good day, by the way.

This past Friday, however, was just the reverse. He left the house happily. We enjoyed listening to our oldies on the way to Paradigm. He was looking forward to some shopping and pizza at the end of the day, after I picked him up.

I pulled up to Paradigm and saw him sitting outside with his friends. His face was red and he was minus his glasses. I just knew…..and I was right. It had been a meltdown day for Aaron, and who knows why? He had broken his glasses….again…..but thankfully this time I was able to pop the lens back in. His staff was talking to me as Aaron sat in the van beside me, red faced from crying. So instead of shopping we just went to get his pizza and then head straight home, where we continued to sort out what had happened. His behaviors were wrong on several levels, and dealing with it would take a long time, I knew.

Hand me the Scrabble board.

And that rule book that I’m working on, continually.

Yesterday we took a walk in Swanson Park, stopping at the recycling bins on our way. The bins were full, so we couldn’t drop our things off then. We enjoyed the park, the fresh air and sunshine, and the deer that we saw. Aaron had a good time, despite complaining of a sore throat.

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Last night at bedtime I told Aaron that we might get some rain, and maybe some thunder and lightning. Aaron loves rain and he loves storms. He followed me up the hall after I delivered the hopeful storm news to him.

“What time?” he asked.

I told him that I didn’t know what time the rain or storms would come, but that if it happened, it would be later. As in not this very minute.

“Like when?” he asked.

I repeated that I didn’t know just when.

“Will it be later?” he continued asking.

Deep sigh……which he totally didn’t notice.

“Yes,” I affirmed. “The rain and possible storms could be later.”

I hoped to finally be finished.

Aaron followed me still.

“So we might not hear it?” he wondered.

The Scrabble board! Where’s the Scrabble board?!

Today Aaron is home with his cold. He is home with me, snorting because he doesn’t blow his nose.

I am re-reading the Monopoly on the Scrabble board rules about patience.

I was in the bathroom. Aaron stood on the other side of the door, happy because he had asked if we could try the recycling bins again. I had said yes, and had also told him that we would run an errand as well while we were out. Aaron sees all sorts of possibilities in the word “errand.” Most of which are in the form of food.

So there he was outside my bathroom door.

“Mom?” he began. “Are we going to recycle?”

“Yes,” I answered. “I said we’ll run an errand and do the recycling later.”

“What do you mean later?” he asked.

I wilted a little.

“Just later,” I replied.

A moment of silence.

“So what time?” he asked.

A Scrabble board in every room is what I need, with all the Monopoly pieces. Certainly in every area of life with Aaron.